Implementation of risk stratification within bowel cancer screening: a community jury study exploring public acceptability and communication needs.

BACKGROUND: Population-based cancer screening programmes are shifting away from age and/or sex-based screening criteria towards a risk-stratified approach. Any such changes must be acceptable to the public and communicated effectively. We aimed to explore the social and ethical considerations of implementing risk stratification at three different stages of the bowel cancer screening programme and to understand public requirements for communication. METHODS: We conducted two pairs of community juries, addressing risk stratification for screening eligibility or thresholds for referral to colonoscopy and screening interval. Using screening test results (where applicable), and lifestyle and genetic risk scores were suggested as potential stratification strategies. After being informed about the topic through a series of presentations and discussions including screening principles, ethical considerations and how risk stratification could be incorporated, participants deliberated over the research questions. They then reported their final verdicts on the acceptability of risk-stratified screening and what information should be shared about their preferred screening strategy. Transcripts were analysed using codebook thematic analysis. RESULTS: Risk stratification of bowel cancer screening was acceptable to the informed public. Using data within the current system (age, sex and screening results) was considered an obvious next step and collecting additional data for lifestyle and/or genetic risk assessment was also preferable to age-based screening. Participants acknowledged benefits to individuals and health services, as well as articulating concerns for people with low cancer risk, potential public misconceptions and additional complexity for the system. The need for clear and effective communication about changes to the screening programme and individual risk feedback was highlighted, including making a distinction between information that should be shared with everyone by default and additional details that are available elsewhere. CONCLUSIONS: From the perspective of public acceptability, risk stratification using current data could be implemented immediately, ahead of more complex strategies. Collecting additional data for lifestyle and/or genetic risk assessment was also considered acceptable but the practicalities of collecting such data and how the programme would be communicated require careful consideration.

A community jury study exploring the public acceptability of using risk stratification to determine eligibility for cancer screening.

INTRODUCTION: Using risk stratification to determine eligibility for cancer screening is likely to improve the efficiency of screening programmes by targeting resources towards those most likely to benefit. We aimed to explore the implications of this approach from a societal perspective by understanding public views on the most acceptable stratification strategies. METHODS: We conducted three online community juries with 9 or 10 participants in each. Participants were purposefully sampled by age (40-79 years), sex, ethnicity, social grade and English region. On the first day, participants were informed of the potential benefits and harms of cancer screening and the implications of different ways of introducing stratification using scenarios based on phenotypic and genetic risk scores. On the second day, participants deliberated to reach a verdict on the research question, 'Which approach(es) to inviting people to screening are acceptable, and under what circumstances?' Deliberations and feedback were recorded and analysed using thematic analysis. RESULTS: Across the juries, the principle of risk stratification was generally considered to be an acceptable approach for determining eligibility for screening. Disregarding increasing capacity, the participants considered it to enable efficient resource allocation to high-risk individuals and could see how it might help to save lives. However, there were concerns regarding fair implementation, particularly how the risk assessment would be performed at scale and how people at low risk would be managed. Some favoured using the most accurate risk prediction model whereas others thought that certain risk factors should be prioritized (particularly factors considered as non-modifiable and relatively stable, such as genetics and family history). Transparently justifying the programme and public education about cancer risk emerged as important contributors to acceptability. CONCLUSION: Using risk stratification to determine eligibility for cancer screening was acceptable to informed members of the public, particularly if it included risk factors they considered fair and when communicated transparently. PATIENT OR PUBLIC CONTRIBUTION: Two patient and public involvement representatives were involved throughout this study. They were not involved in synthesizing the results but contributed to producing study materials, co-facilitated the community juries and commented on the interpretation of the findings and final report.

A Community Jury on initiating weight management conversations in primary care.

BACKGROUND: Current guidelines recommend that patients attending general practice should be screened for excess weight, and provided with weight management advice. OBJECTIVE: This study sought to elicit the views of people with overweight and obesity about the role of GPs in initiating conversations about weight management. METHODS: Participants with a body mass index ≥25 were recruited from a region in Australia to take part in a Community Jury. Over 2 days, participants (n = 11) deliberated on two interconnected questions: 'Should GPs initiate discussions about weight management?' And 'if so, when: (a) opportunistically, (b) in the context of disease prevention, (c) in the context of disease management or (d) other?' The jury deliberations were analysed qualitatively to elicit their views and recommendations. RESULTS: The jury concluded GPs should be discussing weight management, but within the broader context of general health. The jury were divided about the utility of screening. Jurors felt GPs should initiate the conversation if directly relevant for disease prevention or management, otherwise GPs should provide opportunities for patients to consent to the issue being raised. CONCLUSION: The jury's verdict suggests informed people affected by overweight and obesity believe GPs should discuss weight management with their patients. GPs should feel reassured that discussions are likely to be welcomed by patients, particularly if embedded within a more holistic focus on person-centred care. PUBLIC CONTRIBUTION: Members of the public took part in the conduct of this study as jurors, but were not involved in the design, analysis or write-up.

An Australian community jury to consider case-finding for dementia: Differences between informed community preferences and general practice guidelines.

BACKGROUND: Case-finding for dementia is practised by general practitioners (GPs) in Australia but without an awareness of community preferences. We explored the values and preferences of informed community members around case-finding for dementia in Australian general practice. DESIGN, SETTING AND PARTICIPANTS: A before and after, mixed-methods study in Gold Coast, Australia, with ten community members aged 50-70. INTERVENTION: A 2-day citizen/community jury. Participants were informed by experts about dementia, the potential harms and benefits of case-finding, and ethical considerations. PRIMARY AND SECONDARY OUTCOMES: We asked participants, "Should the health system encourage GPs to practice 'case-finding' of dementia in people older than 50?" Case-finding was defined as a GP initiating testing for dementia when the patient is unaware of symptoms. We also assessed changes in participant comprehension/knowledge, attitudes towards dementia and participants' own intentions to undergo case-finding for dementia if it were suggested. RESULTS: Participants voted unanimously against case-finding for dementia, citing a lack of effective treatments, potential for harm to patients and potential financial incentives. However, they recognized that case-finding was currently practised by Australian GPs and recommended specific changes to the guidelines. Participants increased their comprehension/knowledge of dementia, their attitude towards case-finding became less positive, and their intentions to be tested themselves decreased. CONCLUSION: Once informed, community jury participants did not agree case-finding for dementia should be conducted by GPs. Yet their personal intentions to accept case-finding varied. If case-finding for dementia is recommended in the guidelines, then shared decision making is essential.

Developing and applying a deductive coding framework to assess the goals of Citizen/Community Jury deliberations.

BACKGROUND: Public participation in health policy decision making is thought to improve the quality of the decisions and enhance their legitimacy. Citizen/Community Juries (CJs) are a form of public participation that aims to elicit an informed community perspective on controversial topics. Reporting standards for CJ processes have already been proposed. However, less clarity exists about the standards for what constitutes a good quality CJ deliberation-we aim to begin to address this gap here. METHODS: We identified the goals that underlie CJs and searched the literature to identify existing frameworks assessing the quality of CJ deliberations. We then mapped the items constituting these frameworks onto the CJ goals; where none of the frameworks addressed one of the CJ goals, we generated additional items that did map onto the goal. RESULTS: This yielded a single operationalized deductive coding framework, consisting of four deliberation elements and four recommendation elements. The deliberation elements focus on the following: jurors' preferences and values, engagement with each other, referencing expert information and enrichment of the deliberation. The recommendation elements focus on the following: reaching a clear and identifiable recommendation, whether the recommendation directly addresses the CJ question, justification for the recommendation and adoption of societal (rather than individual) perspective. To explore the alignment between this framework and the goals underlying CJs, we mapped the operationalized framework onto the transcripts of a CJ. CONCLUSION: Results suggest that framework items map well onto what transpires in an actual CJ deliberation. Further testing of the validity, generalizability and reliability of the framework is planned.

CJCheck Stage 1: development and testing of a checklist for reporting community juries - Delphi process and analysis of studies published in 1996-2015.

BACKGROUND: Opportunities for community members to actively participate in policy development are increasing. Community/citizen's juries (CJs) are a deliberative democratic process aimed to illicit informed community perspectives on difficult topics. But how comprehensive these processes are reported in peer-reviewed literature is unknown. Adequate reporting of methodology enables others to judge process quality, compare outcomes, facilitate critical reflection and potentially repeat a process. We aimed to identify important elements for reporting CJs, to develop an initial checklist and to review published health and health policy CJs to examine reporting standards. DESIGN: Using the literature and expertise from CJ researchers and policy advisors, a list of important CJ reporting items was suggested and further refined. We then reviewed published CJs within the health literature and used the checklist to assess the comprehensiveness of reporting. RESULTS: CJCheck was developed and examined reporting of CJ planning, juror information, procedures and scheduling. We screened 1711 studies and extracted data from 38. No studies fully reported the checklist items. The item most consistently reported was juror numbers (92%, 35/38), while least reported was the availability of expert presentations (5%, 2/38). Recruitment strategies were described in 66% of studies (25/38); however, the frequency and timing of deliberations was inadequately described (29%, 11/38). CONCLUSIONS: Currently CJ publications in health and health policy literature are inadequately reported, hampering their use in policy making. We propose broadening the CJCheck by creating a reporting standards template in collaboration with international CJ researchers, policy advisors and consumer representatives to ensure standardized, systematic and transparent reporting.

Terminology Change for Small Low-Risk Papillary Thyroid Cancer As a Response to Overtreatment: Results from Three Australian Community Juries.

Background: The majority of small papillary thyroid cancers (sPTCs) are treated surgically, rather than by active surveillance. Patient and clinician preference for surgery may be partially driven by the use of cancer terminology. Some experts propose that changing terminology would better communicate the indolent nature of sPTCs and improve uptake of active surveillance. Others argue that terminology that includes "cancer" correctly reflects the biological nature of these tumors. The views of informed lay publics can provide value-based perspectives on complex issues and guide policy discussions. Methods: We recruited 40 people for three community juries, held in Sydney, Wodonga, and Cairns, Australia. Participants were of diverse backgrounds and ages, recruited through random digit dialing and a topic-blinded social media strategy. Juries were informed about thyroid cancer, overdiagnosis, and overtreatment, and heard arguments for and against terminology change before deliberation. The deliberative process in Jury 1 led to a refinement of jury charge, the updated version that was then used in Juries 2 and 3. Results: Jury 1 favored no terminology change, and Juries 2 and 3 were divided on the topic. Key reasons for opposing terminology change included a strong desire to retain terminology that aligns with the pathological definition of cancer, and to avoid even a minimal risk of harm that could arise if patients became complacent in follow-up. Key reasons to support terminology change included a desire to reduce psychological distress, stigma, and discrimination associated with a cancer diagnosis, and an argument that terminology change may be a more effective trigger for health system reform compared with other options. The juries unanimously recommended community education and health system reforms to reduce harms of overtreatment, and expressed an expectation that clinicians and researchers reach agreement on clinical guidelines to promote better uptake of active surveillance. Conclusions: The conceptual tension between a pathological and an outcome-based understanding of cancer was apparent in deliberation. This highlights an ongoing challenge for those advocating changing disease terminology. Regardless of action on terminology, jurors shared a strong expectation that practical changes would be made to respond to the harms of overtreatment.